Living With Postural Orthostatic Tachycardia Syndrome

[dahaha1415]

I've been living with POTS for a year and 5 months, I was finally diagnosed this month. What you did in this video looks like what I do everyday, And I hate it! Thank YOU so much for making this video! I have been looking for people to talk to about pots so thank you!!!! Feel free anyone who would like to talk about life with pots to add my blog. CiarasHealingJourney.webs.com

[BoiseState415]

I've had pots for 3 months now and its ruining my life

[radlikemad]

@BoiseState415 hang in there! it will get better! stay strong <3

[genefirst]

I just wish they could find a cure for us p.o.t.s.ies...it is taking everything from me i need friends that know what im going through...cause my other friends have no idea...is there a website for people with p.o.t.s.

[JodiePixie1991]

what is the song chick i love it xxx

[vicki4144]

I was finally diagnosed after 2 months of suffering. I actually pre-diagnosed myself before my official diagnosis by the Doctor. I got tired of not having answers so I spent every day searching the internet for answers. I more than met the criteria for pots, so I knew what the diagnosis would be. I just started meds, so I'm hoping for good things. Thank you for your video, the more people who post, the better it is for everyone out there who is suffering. Thank you!

[NakiaaRTurner]

Your amazing! I was wondering what was POTS, I'm so glad you uploaded this video - My heart goes out to you and people with POTS, no matter what everyone still is human diagnosed or whatever, still human in my eyes :)

[jmiogo]

Not sure whether you still keep up on responses to this video but it really means a lot for you to put yourself out there and make this video. I can't tell you how wonderful it is to be able to view this video when I'm particularly down. I hope you realize how many people you help with your videos. Thank you!

[jmiogo]

@vanillamac Hey, I'm a guy too and share in your frustration... well said.

[DarknessXxArtist]

Hey, What's up? Just letting you know, this is one of most moving videos I've viewed so far. I've never heard of POTS but watching this, I understand. I understand because at some point everyone was diagnosed with something that in someway is disturbing their lives. I know how that is. It's really painful. I hope things in really come through for you and all those with the samething. Take care of yourself and I wish you peace.

[hotathlete2]

Hang in there, things will get better. It appears that at this point, I'm defeating my autoimmuned disorder. Youtube is great, I get to meet others that are experiencing what I am. Just try to live your life the best you can. I've been living with pemphigus vulgaris for 4 months already. The first 2 months, I lost more than 50lbs, lost all of my muscle mass, and coordination. BUT, now in july I've returned to the gym and trying to regain my weight and coordination. U can do it too!!

[mewgirl601]

thank you for posting this, im pretty sure i have pots and being in bed all the time is wat i do best.

[koenig12]

I spent about 4 years feeling horrible and finally got diagnosed with POTS a few years back. It is odd that mostly girls get pots, but I'm one of the unlucky guys that ended up with it. I am an exercise fanatic but Pots definitely slows me down on certain days.  There are times I'm just flat dead meat but I pull my self out of bed and find things that help. Routine is key. I have climbed mountains and done things that most pots suffers can not. Push it on good days and rest on bad ones!

[cobaltgnome23]

im 15 and it has been a rough ride for the past three years. my freshman year of HS i got mono and was sick in bed for a year. wen it went away i still felt terrible. its so reasuring that others understand. we dont look sick, but we really r.

[sunkissedbecca]

I watched your video and notice little things only a pots person would. like not leaning over to put on your socks, more comfertable with legs crossed and mostly the reality of what I to do with my day. I was asked by the disability judge what is it I do all day, I didnt know what to tell him. some days are better. some are worse and not worth it. Im glad I found a place to relate to others and I comend you on your video

[fredex426]

For those with POTS:

I had it for 30 years, but only dxd this past year. I am lucky that until now, I have been able to push through and lead a full life. Now I look for ways to manage. Florinef helps, but drink drink drink and salt salt salt. Find a nutritionist and dr who understand POTS. Some drs don't know what it is. If you have a job now, you must be accom. at work in the US by law; you may be eligible for disability. Get iron, potassium, etc. you can still do a lot!!! Keep hope!

[T4Tyson]

Thank you so much for posting this video. I have been living with an undiagnosed condition since 2008 where I pass out and when I wake up I can't move the left side of my body and sometimes can't speak. This can last a few hours to 3 weeks. I got diagnosed with POTS a few days ago. This made me feel like I am not alone.

THANK YOU!!!

[radlikemad]

@T4Tyson i'm glad it helped you! thanks so much for your kind words :) i'm sorry you're going through all this, but know you are never alone!

[T4Tyson]

@radlikemad Thanks <3

[afqdrama]

I've been dealing with some rough stuff for 3 years. I just got partially diagnosed with POTS on Friday night and the doctors aren't really telling me much. This video helped me a lot today. Thanks!

[ChasenJersey]

I have been dealing with blacking out since 1998, i had a catheter ablation to correct a rapid 240bpm heart rate but it did not fix my heart racing or blacking out. I am now 27 and have been diagnosed with Fibromyalgia, POTS, Chronic Fatigue, and Chronic insomnia. I wish people could understand how hard things are for us. Doing the dishes, waking up, taking a shower, etc. People look at us and assume that we are being lazy or over dramatic. I am glad to know that I'm not alone. :(

[malikofkaih]

I am a guy with pots and I am having a really hard time with attending school right now. It is getting to the point where my parents are about to kick me out of the house. everyone in my family is so frustrated with me they think im just so lazy. I was diagnosed with POTS several years ago and it never really affected my life this bad before. it seems to be getting worse and i don't know what to do. but this video offers some comfort in knowing there are many others out there like me.

[q1111w]

I don't have POTS, but you're cute, and when you cried it made me sad :(

[amandahord09]

Thank you so much! Ive had symptoms for about a year since the birth of my second child. It's getting worse everyday. Some days it's so hard to get out of bed, But I have two children that depend on me (Im a stay at home mom). Ive sit and cried because my 3 year old will ask me to take her outside to play and I just don't have the energy. Im just relieved to know someone else knows what Im going through. Thank you from the bottom of my heart.

[drgn420]

Not the best? At least(I assume) u had some class in making videos? And parents to buy a camera? I had the flu once, after losing 10lbs in 2 days, I collapsed on my cheap bed...went right through to the box spring and subluxed my hip, probably hairline fracture but docs always say nothing's wrong. This song is perfect. After 2 days of no meds, I was more loopy than with the meds. That plus slowly being able to eat again... couldn't sleep, couldn't get up, trying to find a comfortable position...

[ShineySabre]

i'm at the point now where these symptoms are becoming a big issue in my life -- though I've not been officially diagnosed yet its becoming a daily struggle to simply function. I have EDS so I had been waiting for when the POTS would kick in. It makes me cry to see others dealing with what I am because I would never wish it on anyone... but at the same time it gives me strength to know I'm not alone. Thank you for posting things like this.

[radlikemad]

@ShineySabre you are definitely not alone. things will get better :)

[lmitchelly]

I was diagnosed with POTS July of 2009. At first when I didn't know what I had, I thought I was dying! Watching your video and seeing how your morning is, is the way I feel too! I have my good days, but more bad than good though.:( This has changed my life and my families life. I hope that some day they find a cure for this and others will not be misserable like us. I want to thank you for this video. Good luck and take care

[radlikemad]

@lmitchelly i truly hope you are feeling better. hang in there. things do get better <3

[TheTwinky128]

wow, this video is so amazing. I was diagnosed with POTS two years ago and have been having sooo much trouble going to school. This video total shows what everyday is like. Thank you so much for making it! xoxo

[radlikemad]

@TheTwinky128 that means so much to me. thank you <3

[vivisonga1111]

haha thats meeee haha do the same stuff :)

[radlikemad]

@vivisonga1111 isnt it funny how we all have similar ways of dealing with symptoms! haha

[glutenfreeful]

thanks for this video thanks for sharing part of ur life with plp like us!!

i was diagnosed 5 months ago, but i lived with this since i was a teenager just without knowing the name of it

i think that we can also find a lot of thing we can do instead of watching tv all day, like paint, read, write,.....

i am 24 years old and i got married 2 years ago and this is a bit dificult for me and my husband

take care

remember that God never give you something that you can not handle !!!

xoxo

[glutenfreeful]

hello

thanks for this video thanks for sharing part of ur life with plp like us!!

i was diagnosed 5 months ago, but i lived with this since i was a teenager just without knowing the name of it

i think that we can also find a lot of thing we can do instead of watching tv all day, like paint, read, write,.....

i am 24 years old and i got married 2 years ago and this is a bit dificult for me and my husband

take care

remember that God never give you something that you can not handle !!!

xoxo

[rashelsaak]

i want to cry. i am crying. i am waiting for my tilt table test in one week. i have been searching for 2.5 years as to what i have. this is my life, and i am a mom to a 2 year old and only 28. i have no life. no quality of life other than watching my very energetic daughter run around. that's the key though.... i only watch. i am a struggling, crying, exhausted, dizzy, heart racing mess. thank you for your videos.

xo Rashel

[conwygal]

i was diagnosed with pots and this video displays my life everyday. glad i found it xx

[samanthajhoblacksher]

i got dinosed with pots tusday

[KEHeathWC]

Hi. So glad that I found your video. I've been living with POTS for over two years now with no medicine response but have learned to deal with it. I have never met or seen anyone else with it so, in a way, it's relieving to know I'm not the only one who has the exact same type of days. Thanks for posting this and take care!

[Magee2207]

HI,

LOVED YOUR VIDEO. SO MUCH LIKE MY MORNINGS/DAYS. FROM A POTS SUFFERER IN SYDNEY, AUSTRALIA. TAKE CARE AND REMEMBER THERE ARE MORE OF US OUT THERE WHO KNOW JUST HOW YOU FEEL.

[seanmiz]

Amazing video, does a great job of representing the daily struggle with dysautonomia. You did a great job with the editing and as always had awesome music to go along with it!

[belladiver612]

I have been following all your videos, i was diagnosed about a year ago with POTS and dont know anyone else with it i feel sooooooo alone! your videos have helped me soooooo much!

[YPOGEIOS70]

Hang in there girl . i had a heart transplant 10 years ago, and i was feeling great until 2 years ago when tiredness kicked in with tons of other symptoms, i am getting a tilt table test done soon for POTS they told me it looks like POTS but to be sure, i am scared like hell

[YPOGEIOS70]

Hey girl hang in there i had a heart transplant done 10 years ago i was 31 then and i was feeling great.... since 2 years ago everything started again in my life going downhill, where i couldnt stand on my feet without my heart racing and a bunch of other symptoms, finally 3 days ago the word POTS came out of my cardiologist mouth and he sheudual a tilt table test to be done on me real soon cause i cant stand on my feet without passing out

[bbthecrazeechika]

THis is an amazing video,

You totally portray how life is with POTS,

I was recently diagnosed with POTS

All the doctors didnt believe there was anything wrong with me

Its really hard psychologically for me especailly...

THank you.

PS whats this song? i love it!

[SharkBateNait]

*sigh* :)

[Scootchinman]

I'm so sorry that your POTS makes you feel like this. I know exactly what it's like and I wouldn't wish it on anyone. I hope you have been feeling better since this vid :-)

P.S. I've never seen someone else that sits indian style on chairs! Haha I'm not alone!! Yay LOL

[SharkBateNait]

THIS one! :)

[hopefulhillary]

Shannon, this video made me ball my eyes out. I was diagnosed with Dysautonomia 2 months ago... this video IS my life. I am thinking of you and praying for you girl. We are strong, overcomers and we will be better some day. :) POTS doesn't define us. Hope you are well. All my love.

[radlikemad]

thank you! i will be praying for you too :) stay strong!! xxo

[westsidemonster]

I had no idea what POTS was till I came across your video..thanks for educating me on POTS,your video was well done..wishing you strength and happiness..

[radlikemad]

thanks so much :) glad you learned something new :)

[Disautonomicus]

My god!, this is beautiful... I feel honored to have you subscribed to my channel! I wish you so much strength!!!...

hugs

Thijs

[radlikemad]

thank you so much Thijs!

[Heatherstl1]

Hi, this video moved me as it is exactly my days too! And such a day is a "good" day for me. It is hard to have this low quality of life. Thank you for letting me know i am not alone.

Heather

(Heatherstl on youtube)

St Louis, MO

[radlikemad]

I'm glad to hear you liked it! I hope you're feeling well today!

[SharkBateNait]

Shannon wow, I just watched this, this is amazing. You sell yourself short - you're an artist. Letting yourself cry for this was really brave.

I hate that you suffer this, but I love that you know what my life is like.

<3

[radlikemad]

Thanks Nate...your comment cheered me up :)

[SamiBebe2]

I have you in my heart. You are not alone.

[radlikemad]

Thank you :)

[DysautonomiaMD]

I love how welcoming and compassionate you are with new contacts...and great job on the advice re: Tilt Test...tomorrow I will post a talk on that, because several people have described different Tilt Table methods...

Please also see my comment under dysautonomia1...

...thanks for your help and your being a Leader in helping others with this diagnosis. You are able to touch a population of people that only you can touch. Thanks for being part of the Team.

LOL, Margaret

[mywestbound]

casey's so wide eyed on the bed!!! i love you banu

[dncr064thaluvofit]

Thank you so much for making this video. For months i've been trying to figure out whats been wrong with me. My parents thought I wasnt telling the truth about always being dizzy until I passed out in the shower and recieved 18 stitches on my eyebrow and chin. This is all new to me, since I've only had the symptoms for a few months now. I have to wear a heart monitor for a day or so soon, so we'll see how that goes. Ugh, living with this sucks, especially coming from a dancer : (

[radlikemad]

So sorry to hear you've been doing so bad! I know the feeling! I used to dance too, and would love to be able to again and if not for POTS i probably would! Have you been diagnosed with POTS yet? If not try to get a dr. who will do a tilt test so that you have a diagnosis :) hope you're feeling better! xxo

[ChanShelly]

Hey, I just wanted to tell you that I have POTS and I used to dance too, actually my story is a whole lot like yours...I was completely fine until one morning while I was getting ready for ballet I fainted in the shower! Let me know if you ever want to talk or anything.

[ChanShelly]

Hm, I remember writing a comment for this but now I can't see it...

I love this video though, you did an amazing job! I'm sorry you were having a rough day :( And pets make everything a little better, don't they!? Your dog was too adorable laying with you on the couch and the bed.

What kind of pill holder do you use? I've thought about getting one, because I often forget what pills I have/haven't taken, but the normal kind just has days of the week and we obviously need more space!

[radlikemad]

haha I'm not sure! i never got a comment...i find youtube often picks and chooses which comments to let through! haha. And yes, pets DO make everything better. I can't imagine living without one :) Also my pill holder is like, the mother of all pill holders hahaha. it has a holder for each day, breakfast lunch supper and pm. so it's pretty intense! haha. i think i just got it at a local pharmacy! It was like $20 bucks though! lol

[alexiaanastasia]

This is all too familiar. Thanks for sharing this.

[radlikemad]

thanks for watching :)

[lilkay000115]

It is us that should thank you, for letting us into your world, and allowing us some little understanding of the things that you go through. I have been subscribed to you pretty much from the beginning, and I'm always amazed at your strength and will. Thank you for allowing us to see through your eyes and be a part of your world. You are truly amazing.

Love & Hugs,

Kay

[radlikemad]

Kay, thanks so much for your comment! It made me feel better after having a bad day. I truly love getting messages like yours, as it makes it feel like what i am going through is not for nothing! xxo

-Shannon

[DYSAUTONOMIAGIRL]

You really hit the nail on the head, hun.. *Hugs hugs hugs* You'll get through this.

[radlikemad]

(hugs) thank you so much :) xxo

[MrFDNY73]

wow you just filmed my life and god i know how that feels but dont ever give up we must fight and get through it keep doing what your doing great video and dont ever give up. From Andrew

[radlikemad]

Thanks so much! i hope you are feeling better!

[TNAD0MINAT0R]

You sigh just like I do after getting ready every day. You cross your legs in chairs like I do every day. You are bored just like I am every day. That's why I go shopping all the time. You are alone just like I am every day while everyone is at work or school.

I don't cry though and it's because I have people like YOU in my life!

[radlikemad]

:D and that makes it all worth it!

[chronicallykyli]

Shannon, this video is WONDERFUL! I could feel and relate to every second of it....beautiful!! (hugs) I hope things are getting better..you're in my thoughts! Talk to you soon :)

[radlikemad]

Thanks Kyli! Hope things are getting better for you as well! xxo!

[jd450lh]

It looks like you finally got rid of that miserable stomach virus, thank the Lord! Thanks for sharing a bit of your life with us...my prayers are with you!

Have a blessed week,

Jeff

[radlikemad]

Yes i think i'm finally getting over that crash...although i got pretty sick again this evening. not sure what is going on...but hoping it's just a small flare up and that i'll wake up tomorrow feeling better :) hope you are well too!

[hiphopqueen265]

aww shannon, you almost had me crying at the end. I just wanted to give you a hug. <3 I loved when you showed your feet up under the table. I'm finally getting to point where I look like that on a good day, so I'm SO happy. A month ago I had to crawl down the stairs and eat breakfast made by my mom lying on the kitchen floor. Bleh!!

Feel better! We can hang in there :)

[radlikemad]

Thanks so much! I'm so glad you're finally getting to this point too! I love having good days! And i'm so grateful for them because i know not everyone is as lucky :) I know the feeling of having to have breakfast lying down. not fun! I hope you're doing well! xxo

[tigiee]

nice video.. thanks for sharing xx

[radlikemad]

thank you!

[CrazySamantha0214]

this was kind of sad.. but very touching :)

[radlikemad]

thanks for the comment :)